Several weeks ago at Splore, I ran, as I do every year, the festival's talk programme, The Listening Lounge. And the highlight this year was a discussion of medical cannabis and the law featuring five people who are at the frontlines of that debate.

Those people were patient advocate Pearl Schomburg, Shane Le Brun of Medical Cannabis Awareness NZ (MCANZ), Panapa Ehau of Hikurangi Enterprises (which will be the first New Zealand company to make a licensed medical cannabis product), Chloe Swarbrick MP and New Zealand Drug Foundation executive director Ross Bell. We talked about prospects for the government's medical cannabis bill, why the Greens' more ambitious bill was voted down and how the system works – or doesn't – right now.

On why the "Chloe bill" wasn't voted through to select committee – and whether its provision for licensed home-growing was a showstopper.

CHLOE: "I think there were a lot of reasons that our bill didn't get across the line. The first was that it was introduced the day after the government introduced their bill. That's just one of the really annoying vagaries of the way the order paper works in the house, but I think it allowed a lot of MPs to say 'we've stuck our neck out this far, we don't want to cross the line any more'. And if you've ever met many politicians you'll know they're not the most risk-inclined group of people. They want to keep their jobs and that means staying as close as possible to the status quo.

"So talking about we how go about getting more compassionate, considerate, comprehensive reform – I've been working quite a bit with Ross, and with Shane, and we're going to be starting a cross-party group in Parliament to try and get an increase in the understanding and evidence base that poltiicians have when they go into these debates. So at the very least they can't say that they don't know the evidence.

"Talking about my bill, the reasons that were cited by politicians for voting it down was first and foremost that they'd opened the door with the government one. But secondly that this would be carte blanche, open-door, anybody and everybody would be smoking cannabis.

"There's a whole bunch of things to unpack in there. The first is that smoking's not actually the preferred way of using for many patients. The second is that they hadn't actually read the bill. Section 6 of the bill proposed a regulatory standard, which would be defined by select committee. And they had this real fear around what came to be dubbed the grow-your-own provision.

"I don't know how they think people are going to be getting their cannabis with the terminal illness defence. There is still going to be the growing of cannabis."

SHANE: "The government is committed to setting up a licensing agency to license the medical cannabis industry in New Zealand. And doctors are quite resistant to prescribing medical cannabis products at the moment, let alone handing out permits to people to grow. So we'd actually put the onus on the licensing agency, so that a patient-initiated application would go to the Ministry of Health's cannabis cultivation licensing agency. And they would review the patient and if they met a couple of criteria, they would be granted the privilege to grow their own.

"Naturally here'd be police checks. We're not going to be handing out any permits to patched members. But there'd also be the efficacy concerns. Youre not going to have a ptient apply for something like blindness, but for patients with severe pain and MS, rheumatoid arthritis, all those conditions where there's moderate to good evidence, they should be allowed to grow their own."

ROSS: "There is the potential in the government bill to create a system as Shane describes it. That's probably the unknown thing about what the government announced in its bill – there's a little bit in the bill which would empower all these regulations. Now, if the regulations the government developed were like Canada or Shane's, then I think we'd all be happy, because it actually picks up a lot of what Chloe's bill did. But I don't think the government's communicated that very clearly and actually I don't know if the government has a good understanding about the extent of those regulations. Because they rushed it through in 100 days."

PEARL: "I think if you're not seriously going to allow people to have a home-grown option, this black market will continue and patients will suffer. Patients are suffering dreadfully at the moment with the black market as it is. People getting ripped off – not only getting ripped off financially but getting sold, cheaply or expensively, very poor-quality products that are actually making them sicker. And it's incredibly dangerous.

"A lot of recreational growers, let's call them, don't understand the need for clean product that patIents absolutely have to have. A lot of recreational growers think their products are okay for patients – and they're not always. Some are, but you need to give patients the right to grow – or to allow somebody to grow for them, because a lot of sick patients can't.

"So although I accept that for patients they need regulation around pharmaceutical products and also products in health food shops, in terms of my right to grow my plants in my garden, I think I've got enough support from my doctor to say that I can make my own choices about whether I grow it, or whether I go to a provider and say here, here's a photocopy of my letters that will keep you safe. There can be a really simple system set up for people like us.

"We do need regulations, but we need to start coming from more of an angle of what do patients want, what do they need? And unless you allow another pathway, the black market will continue."

On how the current system is working, or not.

SHANE: When we first started trying to find cheaper products and made these special applications, the first two special applications in the country had both been epic failures. So [Ministry of Health officials] were quite sceptical that it was going to even work. I had them comment to me about an MS patient who'd already had a good response to Sativex and illicit cannabis – they scoffed and said 'it might not even work, Shane'.

"From there we've gone through perhaps a dozen of these special applications for different patients – and they've all worked. So we've got this issue now where it's still way too expensive and the patients can't afford to go legal. For an epileptic kid, the pure CBD product that's available could cost up to $250 a day."

"The ministry has been looking at regulations around the world at the moment and it's interesting that Canada's the one that keeps cropping up for everyone. The model that our charity's put forward is very similar to Canada. The main driver at the moment is that we don’t want to follow Australia. They have 11 companies trying to grow and about 20 companies trying to import, but they've only got about 350 patients in the entire country.

"So there's a hundred million dollar industry on paper – and yet they've got a couple of hundred patients to fight over between them. So we really need to get loose access down to GPs and maybe even nurse practitioners in some case, so that patients don't have to go illegal, and so we can get enough legal patients on the books to actually have a domestic industry."

On cannabis efficacy and the paucity of medical research.

SHANE: "It's quite a complex situation because doctors like these things called Phase 3 clinical trials – and they cost tens of millions of dollars. And for a plant-based medicine that's not really a doable prospect for most companies, because another company can come along and basically make the same product without the research and rip off their data.

"That's already happened. The main drug for epilepsy is called Epidilex. It's made by the company in the UK who make Sativex. That's being trialled in America and meanwhile we've got a functional equivalent from a Canadian company called Tilray that's here right now and it's cheaper and it does the same job. But there's not a single jot of research behind it.

"But in general terms, when we do literature reviews there's good evidence for multiple sclerosis, chemotherapy-induced nausea and vomiting and for for HIV-induced nausea and vomiting as well. Neuropathic pain syndromes too. And there's weaker evidence for other conditions.

"But evidence versus efficacy is also two different things. In New Zealand we've had two really severe Tourette's patients try Sativex for their Tourette's tics. One of them swore like a trooper, like all the comedies on TV that might rip off and shit on their condtion. But the Sativex worked really well in both cases. So we can say that in a limited number of cases in New Zealand we have 100% success for Sativex in treating Tourette's syndrome. So it's limited evidence – but 'limited evidence' is a moot point when it's working in the here and now."

On Hikurangi Enterprises.

PANAPA: "We've positioned ourselves to be the first company in New Zealand to grow and manufacture a medicinal cannabis product, and it's focused on creating income for our people back home. So we're looking after the land and the people.

"In North America where the cannabis industry has taken off – there's a greenrush around the world and there has been a wave of investment bankers coming in buying out the industry. So we're doing everything that we can to be the first nose through the crack in that door, so we can secure that space or have influence over that space for people on the ground, so it doesn't get taken away."

"Social enterprise is a hyped-up term at the moment, but it's pretty much investing everything back into the benefit of the community. We have a charitable company and a charitable trust and any of the proceeds that come through all go back into investing in more opportunities for our own people, to lift the wellbeing of their families, through them creating job opportunities with the skills that they have, and that they want to use, rather than being forced into boxes."

"The people with the big wallets are chasing in this space and it's our story and the reason why we do stuff that has really been a key component of us being in the lead in the industry.

"We've got to spend the money to go through the clinical trials. Huge amounts of resource have gone in, but it's something we believe in and we're passionate about and that was really the driving force. It's not an easy or simple pathway to go down, but with perseverance and belief we've been able to do it."

ROSS: "I really like the model of Hikurangi. The fear I think we all have is big multinational pharmaceutical companies coming in and dominating a domestic market. I love the charitable trust model, rater than a for-profit commercial model. That's the kind of stuff we should be advocating to the select committee."

On the "green fairies" currently supplying medical users – and in several cases facing serious criminal charges as a consequence.

PEARL: "That's definitely quite a passion of mine. Let's be clear: not all growers are good growers – some are making absolute rubbish and peddling it to anyone they can. But there are some very skilled growers who are making very fine medicines for patients. I use a couple of those products myself. I haven't used any pharmaceuticals for two years now, and I've got a multiple health conditions which create a lot of pain. You can see I've got a lot of scarring on my shoulders – I don't actually have a joint in here at the moment, it's full of plaster of paris. I just recently had surgery on this one here and if I hadn't had that range of medicines with in hospital … I took them into hospital and I never had any pharmaceuticals from the day after surgery.

"The doctors all knew I was using medicinal cannabis. They didn't ask me what I was using and where I was using it. It was on my file, 'patient prefers medicinal cannabis', but nobody talked to me about it it. Which I found quite odd, that doctors and specialists would not discuss it with me.

"The providers that make my medicine for are highly-skilled. And that's why I want an amnesty on the medicinal community at the moment, so that people like that can take in these kinds of of conversations with these wonderful people here, and at Parliamentary level. And we can use that information to bring the good ones up to code, get ride of the duds in the process, because they won't survive without prohibition, the bad fairies. Let's see what we've got.

"Even to go to a select committee is very difficult for these people. It's not only them and their livelihoods – they're supporting a lot of patients. And as happened last year with the busting of one of my good fairies, John Patrick. He was providing balm to myself and my good friend Joan Cowie, who is passing as we speak. He got busted and I can't tell you how heartbreaking it has been to see the damage and the downward spiral in my dear friend Joan's condition since she's lost her most important medicine."

On the government's medical cannabis bill – and the importance of submitting on it.

CHLOE: "The government bill which did get through does three things. The first thing is that it essentially creates a criminal defence for people with a terminal illness. If it is actually to work the way it says on the box, people who have a terminal illness who are using or growing cannabis will still be dragged through the court system and have to prove before the judge how sick they are."

ROSS: "They did not consult patient groups and advocates and I think that was a real shame. I think it's really shameful. So for the submission process, we need to hear the patient voice. The risk with the bill that's coming up in the select committee process is that it'll be the New Zealand Medical Association, the Royal College of GPs, and the people who should be listened to will be ignored. We need to make sure patient voices, their carers, the green fairies are supported to make submissions as well. That's what's missing at the moment."

"We've written a submission guide on our website. For people who haven't written a submission before, it's really simple. Just tell a story. Ask to give an oral submission as well and front up to MPs and tell your story in public. Even if you're not a patient or a carer, but just a concerned citizen who wants to see reform. That's what gets reform done in this country."

CHLOE: "The flipside of what I said before about how politicians are very risk-averse because they don't want to stick their necks out is that if we do put pressure on them and make it known that they will lose their jobs if they don't jump – then they will react. I had a lot of people who were super-disappointed after our members' bill didn't go through and lot of people saying 'oh, I give up, I'm so over politics'. No! You cannot do that or we continue on with the status quo. This has to be the time when as many people as possible start participating in the political system, outside of the three-year general election cycle. You cannot let politicians get away with behaving like this, especially when it diverges so much from what the average citizen actually wants to see with regard to reform."

PEARL: "The time has come to be brave and stand up, if not for yourself then for you loved ones. Please stand up, now more than ever. Be brave – there is safety in numbers. I've been a very out speaker in term of my medicinal cannabis patient. status for 20 years or more now – you don't have to be that out, but step up to your doctors, your MPs. Write a submission."

4 responses to this post

Naturally there’d be police checks. We’re not going to be handing out any permits to patched members. But there’d also be the efficacy concerns.

This is an example of why it’s a slow moving project. When someone starts introducing “patched gang member” to the pollical arena, things get emotional. It’s easy to forget that patched gang members also get old and develop terminal illnesses, just like hippies and guys who wear Italian suits.

Also, when we start introducing patched gang members as a metaphor for unillegible, we would have to then work our way through strings of philosophical arguments about what terminally unwell person, is capable of growing dope? And are they going be able to conceal it from, “patched gang members”. Would we have the police do security of dope growing operation checks of tidy dressed middle class people who apply to grow there own?

It would be simpler to ether treat it the same as any other pharmaceutical, decriminalise it for everyone including patched gang members, and other such alcoholics, and angry people.

Yeah I agree with your concerns. There are some caveats on MCANZ, specifically, we dont dabble in recreational advocacy. In light of the refusal of MPs to accept growing your own as a human right like Canada, we are trying a compromise approach that it is merely a licensed activity on a small scale.